Where to be treated

[Luka1212]

My father has metastatic prostate cancer, just recently diagnosed. He has had two treatment opinions - both suggested ADT, nubeqa, and docetaxel. He is trying to decide where to go and I’m looking for additional opinions.

Option A

- Comprehensive cancer center with amazing reputation

- Did not recommend Next Generation Sequencing testing right now - said we could do this down the road if the tumor stops responding

- Strictly 6 rounds docetaxel

- Less convenient

Option B

- Community hospital

- Wants to do the NGS testing on his tumor now

- Discussed possibility of increased docetaxel to 10 rounds if tolerated (cited that there may be “some evidence to support this”)

- Closer to home

I initially felt strongly that he should go to the highly respected first institution, but I get the idea that he would prefer Option B. Is there any reason to hold off on NGS testing now? And is there any evidence that you all know of to support 10 rounds of chemo (if he’s tolerating it)? I think regardless, the plan will be to get a second opinion at Option A again if the triple therapy stops working.

Was hoping for more objective insight from others who know much more than we do.

Thanks!

[jhatfield9389]

❤️

[Tall_Allen]

I think it's a good idea to wait for NGS (assuming germline was negative). Genomics change over time, so it makes more sense to biopsy a new, non-responding met.

There is no reason to decide upfront how many infusions he will have. You will see how he responds and decide from there.

[Luka1212 in reply to Tall_Allen]

Can we do the NGS on the original tumor and then repeat it down the line on a new sample if needed? Or is this something that insurance only covers once and that’s why we wait?

[Sunshades in reply to Luka1212]

We went to Sloan Kettering and they recommended early ngs testing. We did it and found MIS-H high TMB

[Tinkudi in reply to Sunshades]

Did you try keytruda ?

[Sunshades in reply to Tinkudi]

Currently being treated with keytruda. Just had the third dose this week

[Tinkudi in reply to Sunshades]

How is that Doing ?

[Sunshades in reply to Tinkudi]

Ok so far. No scans yet to tell how it’s working.

[Tall_Allen in reply to Luka1212]

Check with your insurance, but I doubt they would approve it multiple times.

[Conlig1940 in reply to Tall_Allen]

Tall_Allen. 2nd Opinion Biopsy . In a previous poost yo indicated Dr. Jonathan Epstein was in Private Practice . Do you have a contact email , and does he require a doctors referral ?

Thanks .

[Tall_Allen in reply to Conlig1940]

Here ya go:

advanceduropathology.com/co...

He charges $450 and requires a doctor's referral.

[Conlig1940 in reply to Tall_Allen]

Tall_Allen . Much Appreciated . My 1st Transperineal MRI Fusion Biopsy - a 5 Core came back Benign , in complete conflict with my PI-RADS 5 Score .

My 2nd 16 Core came back 6 - Cores Gleason 3 + 3 =6 . A 2nd Opinion came back . All 6 Cores Gleason 3 + 4 = 7 . A 3rd opinion 4 - Cores Gleason 3 + 3 = 6 and 2 Cores Gleason 3 + 4 = 7 . Take your pick . My Urologist at a major Center of Excellence . Princesss Margaret Hospital in Toronto advised My PSA is steady . My CT and Bone Scans were normal . No change in my year--over-year MRI .

I am conflicted remaining on AS and am considering the 5 Fraction Monotherapy SBRT Treatment . YOUR THOUGHTS .

[Tall_Allen in reply to Conlig1940]

Good idea to get Epstein's eyes on it - he is the Gold Standard. It's all about pattern 4 -- if it's negligible, you can stay on AS. Not a bad idea to get a Decipher score too.

[Tinkudi in reply to Tall_Allen]

Is there some appx time period over which genomics change , compared to those found on original biopsy done at initial diagnosis ?

[Tall_Allen in reply to Tinkudi]

No.

[6357axbz]

I decided when first diagnosed to go to MD Anderson in Houston when diagnosed in 2018 and have been very happy I did even though it requires some travel as I live in Florida and Wisconsin.

[Mgtd]

First I am not qualified to comment on potential treatment options but can share my prospective of a local/regional hospital.

You did not say how old your dad is and how long he has lived been in the local community. I had a choice Mayo which was a 3 hour drive one way and our regional hospital that was 20 minutes away. I chose the regional hospital to be near home if something went out of the norm or I was getting sick from the treatment and could not handle the drive.

My buddy at the same time chose Mayo. His lodging and food bills were huge because he could not handle the trips required while getting the treatments. He hated living in a motel. I got to sleep in my own bed and keep my normal routine.

We are both doing well but my experience was a lot easier on me and the family.

[lakeerie]

I went to a comprehensive cancer clinic and it was the best decision as everything is done in same location good luck

[Luv2fish]

so my suggestion is to work with both. We had 2 oncologists, one local and one 3-4 hours away at UCSF. The oncologists worked together, with most of the treatment being directed by UCSF and administered thru our local oncologist.

[Don_1213 in reply to Luv2fish]

Pretty much what I had. At diagnosis - my urologist was local NJ (he found it via digital exam), my radiation oncologist was at a local teaching hospital (that just had put up a new cancer center and had the latest Varian LinAcc,) and my oncologist was at Columbia/Presbyterian NYC - he specialized in prostate cancer and is considered one of the top oncologists for it. I've switched urologists for various reasons - and have settled on the urologists at Columbia/Presbyterian.

It would undoubtedly been easier to use the local branch (NJ - about 15 miles from me) of Sloan-Kettering, and I initially started down that path, but wasn't happy with the feeling of being a number rather than a patient, and the urologist (an intern) assigned to me seemed more interested in getting me into a trial he wanted his name on than getting me started with treatment. He's no longer at SK.

[tarhoosier]

An advantage to SOME advanced centers is that for trials a patient treated at that center may be eligible sooner than someone not from the center. The patient at the center has all data and figures on file, treatment and response history is available quickly, handoff from clinic and treating professional to research arm can be easy and research wants well supported, qualified patients as quickly as possible for population trials. If trials are in the foreseeable future this can be the deciding point.

[Sunnysailor]

my advice is to do the germline and tissue testing now at which ever hospital you choose. Most doctors will listen to patient requests. It will give a better idea of what you are dealing with. As far as hospitals, It really depends on how good the loc hospital is. We have had wonderful experiences with local and absolutely horrible. We were at a national cancer center and then moved to another national cancer center when the doctor we had was a completely disengaged. The NCNN document is the standard of care but like others have said everyone is different. My husband is 63 and could only complete 3 rounds of chemo due to side effects. His next door chemo chair mate was worried about making a golf match. Totally different experience for men in similar age range. Remember you can always switch doctors. Good luck and hope he responds well. He’s lucky to having you advocating for him. Keep doing it.

[Oblivious1]

I am being treated for advanced metastatic prostate cancer and my treatment at Mayo Clinic Rochester is utilizing triplet therapy, so ADT (had one dose of firmsgon initially followed by every three months of Lupron) I began nubeqa about a month after the firmagon and then had 6 rounds of docetaxal. I had genetic testing early on. I am being monitored with periodic PET scans.. So far I’ve had a very good response with the identified cancer areas in my lymph nodes and prostate greatly being reduced. My PSA went from 18.9 to undetectable within a few months. I completed the docetaxel in May of last year so continuing with for now with the likely plan that I will have radiation in the fall. My treatment team includes Dr Kwon in urology along with a medical oncologist and more recently a radiation oncologist. All have been excellent and I have had a great response. As you’re probably aware, triplet therapy is becoming a standard of care for advanced metastatic prostate cancer, though depebding on on people’s individual situations there are many options. I am very glad that I’ve chosen the route that I’ve taken, but I think it’s good for you get information so that you can make the best choice of what works for your father. Good luck to you and your father.

[ArchimedesTex]

If your father is metastatic, I would absolutely opt for an oncologist at one of the major cancer centers if I were him, even if it’s somewhat inconvenient. He is dealing with a very dangerous disease that is a completely different situation than a more ordinary medical issue and he will want to get the most up to date information possible. Once he has a course of action, many treatments can be done locally. For example, if he decides to go forward with docetaxal, those infusions can be done locally. What the major cancer centers offer that is much more difficult to get at a community hospital is point-of-the-spear knowledge and advice. If the treatment is more established and readily available locally, they absolutely should be able to accommodate that. My oncology team is at MD Anderson, but I’ve only done one treatment there because I wanted the treatment to be done by a specific radiologist using a specific technology. Everything else I’ve done locally and it hasn’t been a problem. IMO if you own an NFL team, you want the best head coach you can get, even if you have to pay up for him, because he makes every other member of the team better.

[FrostGyre]

Option C. Clean up his diet. Stop ingesting what is causing the cancer, and the cancer goes away.

Prostate cancer is caused by a poor diet (causing high insulin levels). No need to go through medical poisoning.

Take your pick: (best) Carnivore Diet or (second best) Ketogenic Diet.

[MooseJawg in reply to FrostGyre]

What is your authority for this “magic” regime?

[EdBar]

I’ve consulted prostate cancer specialists that were out of state (required face to face appointment) that coordinated with my local oncologist and hospital. My local oncologist knew the reputation of the specialist that I was using and gave no pushback. I continue to do that and it’s worked out well.

Ed